pcl1029
Forum Replies Created
-
Posts
-
Hi, Gavin and Lainy,
Just let you know, even I had the dish a couple days ago at the restaurent, I still cannot resist the bitter melon since I was hooked on that dish when I was little. So after I wrote the above, it made me very hungry, so I went grocery shopping with my wife and the rest is history.( I had two small bitter melon , about half a pound, and six oz of sliced trout in my tummy now.) ,sorry folks.
But I promise if whenever we have a party in Lainy’ house or her villa at the lake of Michigan , I will cook the dish right there for all of you.
God bless.Hi,
You can get your GP prescribes Lasix 20-40 mg daily and /or Aldactone 25 mg daily for the edema depending on your husband condition. And get lab work order at the same time like CMP OR BMP and CBC so you will know whether your husband will need electrolyte supplement or prescription for potassium and information like anemia and the bilirubin level , liver enzymes level ,so you will at least have a better educational guess about your husband’s current condition.
God bless,Hi,
I think depends on what kind of radiation therapy. If just having the RFA treatment for a couple tumor less the 3cm in size, I do not see why not to have the chance for radioembolization. But if you have SBRT OR other forms of treatment that involved large parts of the liver or nearby organs involved , then you should ask the interventional radiologist. In fact this is a good question and I will ask my friend to see what he thinks of the dose limit.
God blessHi,
Is is also called the bitter cucumber, a green and wrinkle vegetable like the size of a yam or eggplant. It is a dish,you can slice one bitter melon into thin slices,get rid of the seeds inside and throw it away, do the same with chicken or fish in slices too. Start with a medium hot pan, add a couple tablespoon of coin or sunflowers seeds oil to the pan, a couple slices of ginger, chopped and chopped green onion,( one stalk with the whole thing chopped) add to the oil, stir fry till aroma comes out, then add the bitter cucumber ,stir fry for a couple minutes. Get then out, and do the same separately for the sliced chicken without the skin or fish, add oil and crushed garlic (approx half a Teaspoonful) to the pan ,stir,fry the meat until it is well done, then add the bitter cucumber back to pan, stir fry for a min, add salt and/ or soy source to taste and served. Remember it is an acquired taste dish. “black bean paste” available in most Chinese food section of many stores and you can add 1/2to one teaspoonful with the chopped ginger in the process of of cooking the sliced bitter cucumber to truly enjoy it as a traditional Chinese daily dish.
Another easy way of doing this is juicing 1/4-1/2(depending on the size of the melon) with a couple stalks of celery and kale, 1/2 of a green paper .
If you do the juice daily, early in the morning ,like drinking a glass of OJ, I do not see the harm of doing it. The dish, may be three times a week with the evening meals with brown rice . If you want to taste it first to see you like the dish or not, go to a Chinese restaurant and order a dish of “bitter cucumber and chicken with black bean source”, it comes with white rice.
God bless.Hi, everyone,
I am just lucky enough to know the right people at the right time from my church as well as from my high school .
Like all of us, everything we do here are for the sake of the patients and caregivers now and in the future to come. I am just follow your footsteps who came before me. Thanks for the foresight of the people who set up this foundation.
God bless.Hi, everyone,
Here is the article in case some of you have difficult to open the link.
(see above message.)God bless.
Hi, Alan,
Some times messages did get lost in this discussion forum, sorry to miss your previous entry.
I am foremost a patient of this disease for 47 months, as a moderator for this board only for a couple years due to the fact that I do want to contribute something in return to this web site after my diagnosis. i am a medical professional have daily contacts with doctors,nurses and patients as well;but this did not easy my fear of uncertainty about this disease. This board provided me the comfort and understanding that it is not the time but the deeds that define a person. And that is how I got involved with this forum among others.On the other side of the coin, sometimes life needs a detour from the ordinary in order to appreciate God ‘s Grace , blessing and calling.
I am a 64 years old male, compare to me ,you are very fortunate that you discovered this disease so early enough to have the only possibility of cure for this disease.
ERCP is useful but most of the time cannot give you 100% indication of the corrected diagnosis.Only after they operate and get the pathology report on the tumor sample will they are for sure of anything.
Randi, another moderator from this web site, her personal experience will give you a better picture for you to make your final decision.
I am sure once your emotion settles down, you will be at easy knowing that you have made the best judgement that you can for yourself as well as for those ,like your daughter, who love you always.
God bless.Hi,
Sorry, don’t know about this and my oncologist never try to use the stethoscope on my liver. Only use his hands to check my liver for pain or bumps.
God bless.Hi,
Thanks Bruce,
As far as the p value is so high , the graph is too rough or poor in data to prove one of my thinking that patient over 60 or 65 will do much poor after radioembo than those who are younger in age having chemotherapy either with or without targeted agents.
God bless.Hi,
The link below will give you facts about the GEM/CIS+ Panitumumub.http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01320254
Our Gavin find it out a while ago.
Santdad is a patient on this trial of chemotherapy and Panitumumab and you can just use the top right hand box to search for his name and you can find his treatment progress, side effects and the courage to go thru this study.
He unfortunately passed away.But base on one other study of GEMOX and Cetuximab, which is similar to GEM/CIS + Panitumumab , which is similar in using the same family of both the chemotherapy drugs and the same family of EGFR targeted agent, the outcome of the study is not that much different than just use GEMOX alone( the Bingle trial conclusion at ASCOin 2012.)
CCA is a cancer that has no cure except surgery, radiation may help , systemic chemotherapy may be of some value if it had metastasized outside the Hepatobiliary system and it is palliative use only in your case.. But knowledge will help you to make sound decisions including when is enough is enough.
God bless.Hi,
“We’ve recently learned that she was accepted into an anti-PD1 trial, which is not chemo but leads the immune system to fight the cancer. Tissue samples from 2 separate liver biopsies and the C4 vertebral tumor are also being sent to GenenTech and the Caris Foundation for evaluation..
And since your mother has been gone thru a lot of surgical treatment,and the successful outcome of chemotherapy for CCAis around 20% with side effects that can diminish the quality of life substantially for your mom a lot.
My suggestion base on your statement above will be immunotherapy since your mother qualified for. The only worry I will have is the pneumonitis side effect caused by this treatment and the grade 3 diarrhea is of my concern too. But ,overall, it seems the benefit will outweigh the risk.
The anti-PD1 trial looks promising (please read the link below.)http://www.nejm.org/doi/full/10.1056/NEJMoa1200690#t=articleMethods
The message I got yesterday from the hepatobiliary symposium about using immunotherapy is encouraging for CCA patients like your mom and me .Of course I am not a doctor but a patient of this disease too.
God bless..
Hi,
May I ask who was the surgeon and where you had been treated?
Do you still have CT scan or MRI or lab work for follow up and how often?
thanks to stop by our website.
God bless.Hi,
this may explain the complexity of ICCA subtypes.Intrahepatic Cholangiocarcinoma
An increasing global incidence of ICC [5] has recently hastened research in this field to understand the mechanisms underlying pathogenesis of this dreadful disease. Reviewing the mechanisms of ICC indicates that similarities can be drawn between ICC and HCC, which may improve the prospects of this disease in a clinical setting. Particularly, the tumorigenesis models proposed for ICC development are remarkably similar to those for HCC. Furthermore, several histopathologic and gene expression profiling studies have shown PLC tumors that exhibit a combination of HCC and CCA traits, suggesting an overlap between these tumor types. A subtype of tumors showing combined characteristics of hepatocellular-cholangiocarcinoma (CHC) have been reported and proposed to develop from the bi-potential liver stem cells [97]. Even more recently, a new subtype – cholangiocarcinoma-like HCC (CLHCC) -was discovered and characterized as HCC expressing CCA-like traits. The heterogeneity observed between all 4 tumor subtypes could be indicative of their cellular origins from different developmental stages and may also represent a novel way to approach targeted therapy in CCA and HCC [98]. from the link below.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3116244/
God bless.
Hi,
What is the name of the article indicated” there are 57 genetic varieties of cholangiocarcinoma”? I would like to know too.
In the beginning of liver cells development the line of distinction between hepatocytes and cholangiocytes is not very distinctively clear. as the following article said both of them are “arise from the same bi-potential progenitor cells”.http://www.ncbi.nlm.nih.gov/pubmed/21711594
God bless.
Hi,
Please forgive me straightly go to the heart of the issue about your Mother-in Law. As always, use the best judgement that you can to make the best decision from information collected thru the internet. Not all of them are really useful, including this website amd me as well. I am only a patient and not a doctor.
If I were you:
1. Time is of the essence and I will recommend you to get 2nd opinions ASAP by 2 liver specialists (surgeon) ,one(any one) from Sloan-Kettering and the other one is Dr. Kato from Columbia/Pres.(ask specifically you want to see him. ). go to see or have the record sent to them(ie: computer CT scan disc and written reports,pathology report and slide if any, and MRCP and lab works done from Mayo to the 2 doctors. Of course, face to face meeting provide you more info. and the character of the doctor and hence your confidence in them.Compare what the two surgeons’s comments with Mayo’s and try to make the best call you cam for her.2. Chemotherapy are of limited value ,it will be palliative and not curative. surgery is the only possible cure for CCA. Adjuvant therapy ,however, may prolong survival after surgery.
3. Get the 2nd opinions from the surgeons first, and ask them if having the metal stents insertion will affect their surgical decisions for your MIL.
4. university of Iowa is an excellent and comprehensive regional care medical center.(good ranking in general health care) but I do not think they are specialized in cholangiocarcinoca and PSC. I was graduated from Iowa city long time ago.
keep in touch and
God bless.
